Dying Girl Seeking Adult Lungs Wins Temporary Exemption

U.S. Health and Human Services Secretary Kathleen Sebelius told Congress yesterday that she won’t sign a waiver allowing the 10-year-old girl to sidestep the policy because there are people just as sick waiting for a lung transplant, including three other children in Philadelphia. Photographer: Alex Wong/Getty Images

June 6 (Bloomberg) -- The family of a 10-year-old
Pennsylvania girl who needs a lung transplant to survive won a
temporary court order making her eligible to seek an organ from
an adult donor after U.S. Health and Human Services Secretary
Kathleen Sebelius denied her family’s request.

Janet and Francis Murnaghan, whose daughter Sarah suffers
from cystic fibrosis, filed a lawsuit yesterday in federal court
in Philadelphia seeking to bar Sebelius from enforcing a
department rule giving adults and adolescents priority over
children younger than 12 for adult lungs. The rule puts children
at the “very back of the line for lungs from adults”
regardless of medical urgency, according to the complaint.

U.S. District Judge Michael Baylson granted a temporary
restraining order making the girl eligible for a transplant from
an adult donor. Baylson set a hearing on a preliminary
injunction for June 14.

“The public interest here is significant,” Baylson said
at a hearing yesterday. “It’s a better exercise of my
discretion to grant the TRO and to do it right now.”

Baylson said his ruling could affect 16 other people in the
U.S., though it isn’t binding on other judges.

“My entering a TRO in this district only applies to this
area,” said Baylson, a senior judge for eastern Pennsylvania.

Court’s Jurisdiction

Baylson said another person in southeastern Pennsylvania
may benefit from his decision because it’s within the
jurisdiction of his court.

In a letter today, Sebelius asked the Organ Procurement and
Transplantation Network, the group charged with overseeing organ
allocations, to comply with Baylson’s order.

OPTN created a second candidate record for Murnaghan last
night with a birthdate that makes the system treat her as a 12-year-old, Sebelius said in the letter. The girl’s original
record remains active so she retains her priority for pediatric
donors, according to the letter forwarded by Tait Sye, a
spokesman for HHS.

Murnaghan’s family said in a statement after Baylson’s
ruling that they are hopeful for the first time in months.

‘10 Days’

“For us, this means that for the next 10 days, Sarah’s
placement in the queue for adult lungs will be based on the
severity of her illness, and she will not be penalized for her
age,” the family said in a statement. Sarah’s current lung
allocation score is 78, the family said. The measure, used by
OPTN to prioritize patients, is determined on a scale of zero to
100, the network said on its Website.

The Murnaghans had argued in their complaint that
application of the Under 12 Rule unfairly disqualifies children
in Sarah’s condition simply because of their age.

“If Sarah does not soon receive a set of donated lungs,
she will die,” the Murnaghans said in their complaint.

Sebelius told Congress on June 4 that she won’t sign a
waiver allowing Sarah to sidestep the policy because there are
people just as sick waiting for a lung transplant, including
three other children in Philadelphia. Sebelius, at a budget
hearing of the House Education and Workforce Committee, told
lawmakers she prefers a process set by “medical science and by
medical experts” rather than politicians and policy makers.

Lawmakers

U.S. Representative Patrick Meehan and U.S. Senator Pat
Toomey, both Pennsylvania Republicans, asked Sebelius in a June
3 letter to set aside the policy on an emergency basis or direct
OPTN to do more research about the suitability of adult organs
for children.

Yesterday’s order means Sarah would be eligible for a lung
transplant if an organ becomes available immediately, Stephen
Harvey, an attorney for her family, told Baylson at the hearing.
Baylson’s decision wouldn’t mean she’s guaranteed to receive
one, Harvey said.

“We will continue the effort to ensure that the same is
true for children across the country in a similar situation,”
Meehan said in a statement. “The arbitrary policy discriminates
against Sarah and other children under 12 years of age. These
decisions should be based on need and sound medical judgment,
not age.”

‘Tragic Situation’

Lawyers for the department argued in court that the
transplant policy was established with the interests of patients
in mind based on scientific judgment. While Sarah’s case is a
tragic situation, the policy shouldn’t be interfered with, they
argued.

Cystic fibrosis is a congenital disease affecting the
lungs, pancreas, liver and other organs. The lungs of people
suffering from the disease clog with mucus, causing breathing
problems and promoting the growth of bacteria, according to the
National Institutes of Health. While there are treatments, there
is no cure, according to the NIH website.

Sarah’s doctors have decided that transplanting a set of
adult lungs is appropriate in her case. She has been on the
waiting list for child-donated lungs since December 2011. She’s
now in the intensive care unit at Children’s Hospital of
Philadelphia. She will die within weeks without the transplant,
according to the complaint.

Samuel Goldfarb, a pediatric pulmonologist at Children’s
Hospital who’s been treating Sarah, testified yesterday in court
that doctors considered intubating her last week when her
condition worsened. She has since improved slightly, he said.

‘Scarce Resource’

“Donated lungs are a scarce resource for persons in need
of them, but the scarcity is much greater for children than for
adults,” according to the family’s complaint.

The pool of lungs donated from adults is more than 50 times
larger than the pool of lungs donated from children, according
to the complaint.

The Organ Procurement and Transplantation Network, created
by Congress, operates as an independent nonprofit group under
federal contract to manage transplant needs. Almost 1,700 people
nationwide await a life-saving lung transplant, including 30
children ages 10 or younger, the network said in a May 27
statement. Last year there were 11 lung donors from the ages of
6 to 10, the network said.

A petition started by the Murnaghan family on change.org
seeking a revision in the lung-allocation policy had more than
340,000 signatures as of yesterday. The family is pursuing other
options including a public outreach for a directed set of lungs,
according to the complaint.

The case is Murnaghan v. U.S. Department of Health and
Human Services, 13-cv-03083, U.S. District Court, Eastern
District of Pennsylvania (Philadelphia).